Kate Swaffer: Creating life with words: Inspiration, love and truth

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Rehabilitation for dementia

There is emerging evidence for non pharmacological interventions for dementia, and evidence for life style changes as a way of preventing a diagnosis of dementia. It is, for me and many others living better with dementia, in spite of the sector telling us to go home and give up, very exciting times! Who knows how many of us could possibly even stay at work, with immediate and intensive rehab?!

Some new, but very dear friends in Kiama, Veda and Lynda asked me to share the self prescribed rehabilitation program I maintain, which is now encouraged by my neurologist in North Adelaide Dr Casse who also offers intensive brain injury rehabilitation to his other patients with dementia; my Neuro Physiotherapist now includes rehabilitation for dementia in the Masters of Physiotherapy program he runs at Flinders University. I will write a blog about this as well, very soon.

When I was first diagnosed, and for some time after, I ‘almost’ accepted the Prescribed Disengagement dished up to me. Thanks to being at university, and being connected with their Disability Advisors, I found another way to live better with dementia. One with support for disabilities, and a focus on the assets I still had. And then I decided to think about it with my ‘nurses hat’ on, and wondered why I had not been offered intensive rehabilitation. It seemed logical to me, and it was unethical not to have been offered it.

I’m currently writing it up as an article for publication, but for now, this blog is at least a start, although I apologise it is a bit rambling… definitely too tired to tidy it up though!

At the moment I am doing a short MOOC course, Rethinking Ageing, through the Melbourne University, and one of the participants, a speech pathologist said yesterday that language changes are a clear sign of a dementia process starting and these professionals are very important in stroke recovery. Of course, I say, so why not dementia????

Anyway, back to this blog about rehabilitation. I continued to study at university, which I believe is one of the keys to my slower deterioration of symptoms. Not meaningless brain training games on an iPad, but really interesting courses that stretch me to think really hard, stretch me to write, stretch my brain to learn new things, which quite often these days, I don’t remember what I have learnt or read about, but that is not the point.

For me, studying something I am really interested in is a truly engaging, meaningful and purposeful activity, and excellent neuroplasticity training. Much more fun than Bingo.

There are three books I consider more than recommended reading anyone who wants to change their life, their thinking, and improve their health, as follows.

Norman Doidge’s book The Brain That Changes Itself, offers significant anecdotal evidence we can rewire our brain. I firmly believe that. Dr Bruce Lipton’s book The Biology of Belief: Unleashing the Power of Consciousness, Matter and Miracles, brings evidence to light that it is possible to change your cells through belief. I also believe that, and have since my early 20’s. Dr Lipton has proved it. And finally, Dr Martin Seligman’s book Flourish: A Visionary New Understanding of Happiness and Well-being is on changing our thinking, and flourishing by being more positive. I met him a few years ago, and told him he had stolen my manuscript! When I read this book, I felt as if I had written many parts of it, as I have been on the path also since my 20’s.

I have written and presented many times on the non pharmacological and positive psychosocial interventions I use to live better with dementia. They may not be a cure. Most of them have little evidence (yet) to support them. However, they do ensure my life is more positive, meaningfully engaging, and productive. For me, they are The Olympics of my life. Last week I was talking to Professor Pond, an academic medical practitioner from NSW about some of the interventions I use, and over the weekend she did some research into the value of speech pathology for dementia.

In an email yesterday she said: “It was very interesting talking to you about the speech therapy rehabilitation around word finding and so on which you have found so helpful. I have done some reading around this over the weekend and can see that there may be a sound biological basis for it.

Of course you are right that there are other non pharmacological interventions that are helpful as well.”

I was delighted she took me seriously, and did some research into it, as she is currently involved in writing guidelines for dementia. This blog is a list of the interventions I was engaging in back in 2013, which has been revised and added to significantly since then. I will elaborate a little in this blog, but will attempt to detail more fully the more important ones over the next few weeks.

My physical rehabilitation includes almost daily brisk walking for 60 minutes, Pilates, strength and balance exercises, speech pathology, hydrotherapy (although I am not currently doing this as the brain injury unit was closed down by our useless government), as well as Transcendental Meditation, Mindfulness, and self hypnosis for pain management. The reason for the last two, is that I live with high levels of chronic pain, and do not like the cognitive side effects of medication much stronger than paracetamol, and so, only very occasionally take anything stronger.

This is a slide which I used at a National Dementia Congress pre conference workshop in Melbourne in February on models or post diagnostic pathways of care; one is the current model of care offered to people with dementia, and the pathway on the right is the model of care or post diagnostic pathway I have followed.It highlights well what is wrong with the current post diagnostic pathway. It is updated, from one previously published.

We must find ways to improve the post diagnostic pathway of dementia care, at least in line with someone who has had a stroke.

People with dementia have an ethical and moral right to a post diagnostic pathway of care.

Finally for tis blog, Advocacy is one of the positive psychosocial and non pharmacological interventions for dementia that I use, almost daily, and when I look around the world at who is living better with dementia, and who is speaking out and advocating, they are often the very same group.

I strongly recommend speaking out, and up, for yourself, especially if you have dementia. Do not let people without dementia dictate what is best for you, nor tell you how you feel.

Of course, there are quite a few feathers being ruffled globally, feathers belonging to people without dementia, who do not like their position of power and supposed knowledge about our experience, being challenged.

Recommended reading:

Doidge, N, 2012, The Brain That Changes Itself, Scribe Publications.

Lipton, B, 2005, The Biology of Belief: Unleashing the Power of Consciousness, Matter and Miracles, Hay House Inc. (This is much cheaper bought as a Kindle book)

Kate, I posted some of your stuff on a PPA support group page and also asked if anyone there had a “care planning tool” that would encompass relationships, community, environment, specific therapies etc. etc.

The response was overwhelmingly that I must not have really understood PPA, or was still in denial if I thought there was any point in planning for progression of the disease!!! The fatalism is so overwhelming and seems to me to be an excuse for not learning about what’s actually going on for the person with dementia. Always the focus on hopeless loss, not on maximizing quality of life. No honest palliative care approach- in the holistic sense- either.

Interestingly, the person who read and liked all the posts is the young woman in her late 20s, living with PPA, who started the page and generously shares lots of tips, resources and techniques. The tone of the rest was “there there dear, you’ll just have to deal with it as it happens, why bother knowing why?”

So I’m more than ever convinced that urgent work is needed on support planning, peri-diagnosis as well as post-diagnosis. It’s a project that we want to put in place at Kiama, from what we know people missed out on….or are missing out on, as finetuning diagnoses takes time and may change over time.

I’m trying to work out how a group of PWD and a few supporters (our social DAG for example), could provide initial social support while people are still in shock, have a thousand questions in their heads and fear in their hearts. How to offer people other options than immediately shutting the door to the world, how to reassure people that their lives aren’t frozen because “it seems you may have dementia”. What stops people from wanting to know about their dementia?

“What kind of dementia is it, how will it change my life, how will I get around my disAbilities? And who can help me with what?”

I just don’t see that the time-worn adage of “let’s all take it slow, we’ll deal with those questions when we get there” (from health professionals, mind you) is anything but patronizing and frustrating.

Dear Lynda, THERE IS SO MUCH WORK NEEDED TO CHANGE ATTITUDES, it is sometimes overwhelming! I’d be keen to join this support group as well, if possible, as PPA is on my list of disabilities. The system is still, in spite of many in it denying it is not, selling us Prescribed Disengagement, which leads to hopelessness, learned helplessness, depression, aged care and death, which is basically supporting death on diagnosis. Infuriating for sure, and so hard to get others to see there is another way, prior to death.

Kate, I thought you might be interested in the group!😉
It’s a real mix of people with PPA, some care partners/
supporters,some professional caregivers.

Have a good look at what’s already there – I’ve found that it’s important to tread lightly: some of the comments from people without dementia must be confronting for people with PPA and have been pretty tough for even me to swallow.

Natasha Young runs the Primary Progressive Aphasia Support Group:she’s amazing.

I so enjoy reading your blog Kate. I concur with your ideas. in my work, I find people are looking for the ‘magic pill’ to give people with dementia. There is very little understanding about all the important interventions you have mentioned which make an impact and difference to a person living with dementia. I know this as I have the good fortune to facilitate a rehabilitation group specifically for people who have been diagnosed with dementia, the improvements in our groups wellbeing are visible and measurable (for the funders!) Have a super day..

Thank goodness some are offering and supporting rehabilitation! I learnt yesterday it is more common to be offered in Western Australia, but possibly nowhere else in Australia, other than small pockets of excellent providers or clinicians. It is on the national agenda, at last, and perhaps the global stage since my talk in Geneva… fingers crossed, always!!

Thank you Kate this proves quite a lot to many people. I will contact you about this when I get home as I do not have Internet in the caravan, and di not have your email address, keep up the good work
Your a true inspiration to us all.

Good morning Kate, The topics from the conference in Feb, and your slide above look great. I teach health and social care professionals and would like to utilise your work more. Would it be possible to have a copy of your presentation, or just the attached slide as I cannot enlarge to read it clearly.
Many thanks for continuing to share all of your knowledge and personal thoughts.

Thanks Kate – as always, you continue to inspire us. I find your thoughts about rehabilitation quite refreshing and have for some time now, believed that we should be focusing more on the positive and not the negative!

OK Kate, I am now so enthralled with your life teachings that I find myself being sad that I didn’t know about you earlier. I say this in a positive sense 🙂 All that you say is logical thinking and natural, therefore, it just needs to be reinforced to the public and the “powers”. The more the merrier and I just feel that people are beginning to hear YOU & others and hopefully if united we stand on this issue, the barriers will come tumbling down, sooner then later !!
I am not a PWD but my dearest Dad was and I carry his eternal torch xx
I want and need to support you and other PWD in any way I can please.

Thanks for sharing, and perhaps you might like to volunteer for Dementia Alliance International in some way, as although you do have to be diagnosed with dementia to be a full member, others can be part of our work in other ways.

Very Well written Kate I was hanging off every word. We need more people who are prepared to speak out about their diagnosis and what they are going through now, re, exercise of body and mind. Congratulations on a great read as usual

Hi Katie. Have just recently been following your blogs. (FYI, my wife who is 58 was diagnosed last year with younger onset alzhiemers). Your post today was very encouraging and interesting….Have you heard of Dr Caroline Leaf? She has a book “Switch on your brain”. While its not a book about dementia it seems to be very similar to “The Biology of Belief….We too are not ‘rolling over’ and simply accepting everything…Once again thanks, Jack

Hi Jack, Thanks for the tip re Dr Caroline Leaf, who I have not heard of before… I will get that book ASAP! and good on you for not rolling over and accepting the fall as an immediate death. There are and will be many changes, but that is no reason to give up, IMHO. Take care both of you, Kate x

I was thrilled to read this. I’ve said for some time that we need to be doing more actively in the area of REhabilitation, and not just habilitation. Especially if done early enough, there IS a strong possibility of recovery of some skills and a delay in the loss of others. I have seen mant, even in the latter stages of their journey, be able to benefit from such practices — sometimes to a very great extent. I am rabidly against the use of drugs to control behavior problems. Thankfully, the prevailing opinion seems to be changing here. And yet, so often I will introduce myself to a nre resident or family mrmbet, only to be told, “Oh, my speech is just fine.”